DCIS - so confused on surgery option

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CarlaJG
CarlaJG Member Posts: 8

Hello. I am 46 years of age and was diagnosed with High Grade Negative DCIS a week ago. I do not have the mutation, but my riskscore is above the threshold. I have a strong family history of cancer on my mom's side. My mom was diagnosed at the age of 49 and became a survivor. Many years later she passed away from non-small cell lung cancer. My surgeon is recommending lumpectomy with radiation, but said I can have a mastectomy. My Oncologist is recommended a mastectomy. All my Doctors tell me both decisions are right decisions. I have to be comfortable with the decision. This has not been easy for me and I keep going back and forth between the two surgery options. I'm looking for feedback on what stage someone was, what did the Dr. recommend, what option was chosen and why. I am not particularly attached to my breast. I want what is best for me long term with regards to limiting reoccurrence as best as I can and getting good results with both breasts looking somewhat the same :). I am blessed to have a wonderful support system and my husband is amazing.

Comments

  • Peacetoallcuzweneedit
    Peacetoallcuzweneedit Member Posts: 233
    edited April 2018

    Hi Carla - Sorry you are experiencing this...the beginning and all the decisions are very difficult. I was 47 last year at diagnosis. My DCIS was high grade with necrosis, 6cm at finding...so a lumpectomy was not recommended. On my right side I had a 3cm spot that they wanted to watch and every 6mos do a mammo....so not my style to sit around waiting every six months. I did not have an attachment to my breasts either...so I chose DMX with reconstruction...tissue expanders and implants. I am still not 100% finished with reconstruction...it is a LONG road....Carla other ladies will be along soon with different choices....the main thing is you do what you believe is right for you. There are many threads on this site regarding lumpectomy and mastectomy --> search in menu to the left....you will see a lot of good information, experiences... sending a hug....

  • CarlaJG
    CarlaJG Member Posts: 8
    edited April 2018

    Thank you. I don't feel strongly one way or other at this time. I am on 6 month MRI testing for my left breast and I too do not like to sit around and wait. DCIS is in left breast. Still reading to get information to make an education decision that works for me. :) I agree it is a decision made by the person going through it. Thank you again.

  • strawberrybubblegum
    strawberrybubblegum Member Posts: 8
    edited April 2018

    Hi CarlaJG,

    I had a similar situation as you. After my lumpectomy, margin wasn't clear. I was bumped, and facing a decision of another lumpectomy or MX. My BS said both options were fine. I chose MX to avoid radiation, and also my small breast would have been even smaller if I chose another lumpectomy. Well, here is the tricky part. After UMX, margin still wasn't clear. Yes, this is possible. My BS said I might need to have radiation (even after MX). Luckily, BS evaluated my situation... since my DCIS was close to skin, she decided to take out some skin to clear the margin. So, after MX, I had another surgery to remove some skin, and finally it was all clear. No radiation is needed.

    My decision priority is 1) lower recurrence rate; 2) limit treatment (radiation or Tamoxifen) side effect. After 4 surgeries, I figured surgery really is the least impact. I was lucky to get away without radiation, but still have to take Tamoxifen. Also, I have a pretty demanding job and choosing lumpectomy with radiation is going to make my life miserable (visiting hospital for 5 weeks straight). That's another reason for me to choose MX. My genetic test is negative. You should probably test it before making a decision. Good luck!

  • LisaK12
    LisaK12 Member Posts: 107
    edited April 2018

    Hi Carla --

    I was in a similar position to you and decided to do a double mastectomy with immediate, direct-to-implant reconstruction (no tissue expanders), using alloderm, and silicone implants placed on top of the muscle (pre-pectorally) rather than underneath the muscle. The reason I chose that route was to have as few surgeries as possible and to reduce the recovery time. Not all surgeons will perform this as it is newer than the older, under-the-muscle technique, or using tissue expanders. I am only three days out from surgery but so far so good. I have full range of motion in my arms. I have some chest tightness and soreness and itching, but the pain is not severe. My plastic surgeon said she did some manipulation of the area of the pectoral muscles where they meet the implants so that the area will be smoother and you won't see a sharp line there. I have four drains in and that is the hardest part because I cannot shower until the drains come out. And I don't like wearing the surgical bra 24/7 because it is tight. But I can live with it for now.

    If you decide to go the mastectomy route and can do nipple-sparing, you might want to look into that. That way the incision would be in the inframammary fold underneath the breast and it is almost invisible. That was not an option for me because my DCIS was directly under my left nipple. Ultimately I decided to have them remove both nipples so that I will get the most symmetrical outcome possible. My surgeon used a vertical incision so that she could lift and tighten each breast. I got smooth round Mentor silicone implants. I will eventually get nipple tattoos. On the plus side, once this is over I won't need to wear a bra anymore -- woo hoo! (I always hated wearing bras.) If anyone had told me years ago that I would get implants and tattoos I would have said they were crazy, but here I am!

  • LisaK12
    LisaK12 Member Posts: 107
    edited April 2018

    Carla -- For what it's worth, I just got the pathology report from my bilateral mastectomy and sentinel node biopsy. The key takeaways are (1) the sentinel node was clear; (2) DCIS was present on 9 out of 45 slides (one-fifth) of the tissue samples from my left breast, which I doubt they could have removed successfully with a third lumpectomy; and (3) while DCIS was not found in my right breast, lobular carcinoma in situ and atypical ductal hyperplasia -- areas of abnormal cell growth that increase a person's likelihood of developing invasive breast cancer later in life -- were present in my right breast as well as my left. Multiple intraductal papillomas were present in both breasts as well, which are also markers for increased risk of breast cancer. So I am feeling very good about my decision to have a bilateral mastectomy. While it wasn't an easy decision, it was the right one for me.


  • Aprila1
    Aprila1 Member Posts: 18
    edited April 2018

    Hi all. I'm also new here.

    Briefly (long) 😁 history. At the time of my CA I was 36. I am now 38. I was diagnosed with Uterine Cancer back in May 2016. Early stage, Stage 1A.

    I found a lump in my left breast about 6 months later and had a mammogram done and they found the calcification in my right breast. Go figure 🙄. They weren't going to biopsy the area but I demanded they do since I just got done having a radical hysterectomy for cancer. Well, glad I did because because they found the area in my breast to be Atypical Ductal Cell Hyperplasia.

    Well because of my Uterine Cancer my breast surgeon and oncologist had me do genetic testing/family history. The genetic counselor found that I'm at a 43.4% chance of getting breast cancerin my lifetime 😬

    My breast surgeon is recommending a Bilateral Mastectomy but Insurance will not cover reconstructive surgery which is $10,000 🤔

    So a little over a year later my breast surgeon said I have to have a Lumpectomy. There has been little to no growth to this area.

    I am going into Surgery this Friday for a Lumpectomy.

    My question, finally is. Is it possible to have DCIS but with very little growth noted on a mammogram?

    I'm so scared it's going to be upgraded from ADH to DCIS

  • Lula73
    Lula73 Member Posts: 1,824
    edited April 2018

    Aprila- you’ve been thru the wringer. Are you in the US? I’m asking because if an insurance company covers mastectomy, they have to cover recon by law.

  • Mucki1991
    Mucki1991 Member Posts: 294
    edited April 2018

    I strongly recommend that you review images of mastectomy results so that you can really see what end result could be. I didn't have a choice as I had 4 high grade tumors. I'm sorry you find yourself in the situation. I haven't gotten used to feeling cold imp!ants where warm breasts used to be. There's a lot to consider and there could be lasting impacts besides amputation of the breast.

    Best wishes for you.

  • Aprila1
    Aprila1 Member Posts: 18
    edited April 2018

    I do live in the States

  • Lula73
    Lula73 Member Posts: 1,824
    edited April 2018

    Aprila- so your insurance company told you they don’t cover reconstruction after mastectomy or is it possible cosmetic procedures not being covered is getting in the mix somehow causing confusion?

  • sandcastle
    sandcastle Member Posts: 587
    edited April 2018

    It, is the Law in New Jersey....Liz

  • Lula73
    Lula73 Member Posts: 1,824
    edited April 2018

    it is the law in every US state if mastectomy is covered, recon of your choice is also covered.

  • CarlaJG
    CarlaJG Member Posts: 8
    edited April 2018

    yes in the US and thankfully I have great insurance

  • CarlaJG
    CarlaJG Member Posts: 8
    edited April 2018

    Thank you very much. Everything you wrote made sense (you know how crazy our minds can get with this and most importantly, felt right) I am going to ask my PS about the direct to implant option. I have been researching and talking to others about it. I'm glad the pain is not horrible for you. Please keep me updated on your progress. Again, thank you very much.

  • Lula73
    Lula73 Member Posts: 1,824
    edited April 2018

    Carla- there is also mx with immediate DIEP or SGAP reconstruction. They use either excess tissue in your tummy or hips to make new breast mounds. So you end up with natural looking and feeling breasts + either a tummy tuck or butt lift.

  • CarlaJG
    CarlaJG Member Posts: 8
    edited April 2018

    Thank you. Unfortunately, they can't take from another part of my body. I don't have excess tissue. I'm a very slender person.

  • TookieRN29
    TookieRN29 Member Posts: 3
    edited April 2018

    Hello Carla, as I texting her from home as I am 6 days post op a bil mastectomy without reconstruction. I was dx'd BRCA+ 7 yrs ago and had a total hysterectomy at that time. I felt it would just be a matter of time before this decision would have to be made. A MRI and box revealed DCIS in left breast. I chose bil Mastectomy without a thought. The “no recons" was a bit of a decision though. Just found out y'day that 3/3 sentinel nodes were negative. Yay! Now for the healing. I am 58 in a couple months, happily married 40yrs and just want to get on with the job of living. This stalled feeling is the worst. A weight has been lifted and I feel so blessed to have caught it early. Option of Deip is not readily available in the area I live, tissue expanders were used by my daughter and work well for may people but it is a long process. I hope your decision comes easy and works well for you. I am going to embrace flat and fabulous and maybe occasionally fit and a bit fluffy!! Good luck girl!!!

  • LisaK12
    LisaK12 Member Posts: 107
    edited April 2018

    There is also the option of direct-to-implant reconstruction at the same time as the mastectomy, as long as you are ok with being with about the same size or a little smaller, depending on the blood flow to your skin. I had 530 ccs taken out on each side and 550 ccs put in, pre-pectorally.

  • CarlaJG
    CarlaJG Member Posts: 8
    edited April 2018

    Hello everyone. First I would like to thank all of you for sharing your experiences with me. I have decided on a DMX with reconstruction. The Dr. are going to see if they can do a direct to implant or if I need spacers.....side note: do you know they have a spacer that you control yourself via bluetooth. I am waiting on a surgery date, but can say I feel like a huge weight has been lifted off my shoulders. I'm very scared due to the unknown, but I'm relieved at the same time. xoxoxoxo

  • MBPooch
    MBPooch Member Posts: 229
    edited April 2018

    CarlaJG - I was diagnosed with DCIS last October and knew I would constantly be looking over my shoulder if I didn't do a BMX. I just didn't want the constant anxiety. I was able to go the direct to implant route but knew depending on what they found, condition of skin, etc I could have potentially woken up with expanders. I've had absolutely no issues and am so thankful for this option. The first few days you really have to take it easy, the drains are a major pain in the butt but I didn't find the recovery to be too bad. 4 weeks later I hosted Xmas Even and 5 weeks later I traveled up North for a long NYE weekend. I was diligent about the exercises and got back into yoga after week 6 and I think that made a huge difference in my recovery and range of motion. Glad you've made a decision you feel good about. Wishing you the best of luck, you got this!

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